Hi Karen,

Just a quick detail on the symptoms/criteria of spondyloarthropathies, at the basis of them all, all the SpAs involve sacroiliitis.

A little quote from emedicine:
"The spondyloarthropathies are chronic inflammatory diseases that involve the sacroiliac joints, axial skeleton, and, to a lesser degree, peripheral joints and certain extra-articular organs, including the eyes, skin, and cardiovascular system. The etiology is unknown but involves the interaction of genetic and environmental factors"

I think folks really do care about each other here and don't intend to offer advice and personal experiences with disrespect but to offer real honest direct advice or opinion that may genuinely help steer someone in the right direction. I wonder if there is any way that you could come back and read this from an entirely different perspective? A complete 180.

What if challenging some of your beliefs isn't a sign of disrespect but the exact opposite? Imagine if you were me, wanting always to be polite wanting everyone to get the support they need most to figure out their pain, wanting to be direct without causing offence (as it seemingly has at times) and then having my politeish points, hours of researched links trying to help, seemingly dismissed each time. Do you see what I'm getting at? Respect goes both ways too, doesn't it. I'll admit it is a bit difficult for me to be given lessons on AS or meds after my 29 yrs with it, from someone without a diagnosis who has been reading up on it for but a fraction of the time I've been enduring it's wrath. But please know that I've not taken offence as I feel it's very unlikely you mean to be condescending but just mean to debate a possibility or differing take, and I've recognised you've been speaking from a position of emotional pain. I wish you might see the same thing in some of our replies here.

I really don't believe that anyone has sought to minimize your pain or frustrating journey Karen. I can see why some of this is upsetting to you but I really hope and wish you could change this perspective.. if we were sitting next to each other rather than reading print perhaps it would all be so much easier to convey. Or perhaps not.

Here, in kindness, I offer this bit. Not on any day in my 29 yrs with AS could I have hoped to do your exercise to realign the SIs as you described. Perhaps some others with AS could do it(?), but for me I was lucky if I could make it to sitting gently on the edge of a bed and slowly lowering myself to horizontal without torment. When I read these kinds of passages they don't strike me as someone afflicted with my same disease but obviously this is just my perspective and just one lone example. On Friday when a few of us kickers got together for dinner, I listened to Adam describe a painful time he had one evening when walking home in the rain. He shared this with us in about 3 simple sentences. I recognised his words as my own. I felt I knew exactly how he felt in that moment. It is a sense. I always say I'm not a doctor but I am a long term sufferer.

The kindest most respectful thing we can do is to give you our honest opinion.

Gosh I hope this comes across as I intend Karen and hope you sense and can read between these lines that what I write you is intended only to help. I'm not sure what the answers are for you, (Wendy's was easier to guess! ) I can only suggest you try to keep a broad view of the possibilities.

Take good care,
mig